As someone who relies on several immunosuppressant medications to function, the onset of the COVID-19 pandemic was very, very scary for me. While the news kept trying to reassure people by emphasizing that the virus primarily impacts those who are elderly or have preexisting conditions, even my 7-year-old was smart enough to see the flaw in that logic.
“What about you, mama?” he asked me.
I talked to him honestly about my risk as a woman diagnosed with rheumatoid arthritis (RA) and calmly emphasized that staying isolated at home would keep our family safe and make the world safer for everyone else, too. Yet while I’ve maintained an optimistic outlook for my kids, internally I’ve been struggling with anxiety.
As lockdown orders and other precautions lifted, I expected my anxiety to lift too—but the opposite has occurred. I watched in horror as people “went back to normal” even as infection numbers continued to increase. At the same time, I felt guilty for keeping my kids isolated when they could see the neighborhood kids playing together again through our front window. And as fall approached, I struggled with the fact that my higher risk may necessitate my kids returning to a less-than-ideal learning situation online, even as their friends return to school in person.
That said, I knew I couldn’t be the only patient living with a rheumatic disease who was struggling to see a path forward. And so, I reached out to a few friends to hear about their experiences during the COVID-19 pandemic. Here is what they told me. (Note: Some names have been changed to protect patient privacy)
Some patients with rheumatic diseases had no choice but to continue entering hospitals during the pandemic to receive the care they need. This was the case for Rick, who has been living with type 1 diabetes for 46 years, RA for 21 years, and ankylosing spondylitis (AS) for 5 years.
In early March, Rick had to have a necessary and extensive surgery to repair his back. His difficult and ongoing recovery, which included regular physical therapy, all took place during the pandemic. When I asked Rick how he felt about the COVID-19 risk, he told me, “I would say I am scared to death, and I seldom get afraid. I know that society is discounting my situation.”
Despite his fear, Rick said he was very impressed with the quality of the medical team responsible for his care post-surgery. He said his rheumatology nurses went out of their way to keep his infusions on schedule, have prescription refills delivered to his house, and take care of him in the infusion center. “Sometimes it takes a village to run a rheumatology patient,” Rick said. “These past few months it has taken a huge village, indeed.”
For less urgent medical needs, patients living with rheumatic diseases have needed to weigh a variety of factors, including between the risk of exposure, the value of telehealth appointments, and simply delaying medical care. Jed, who has been living with AS for 26 years, runs a Facebook group that supports more than 27,000 patients. Within that group, he has seen a lot of debate about the value of telehealth appointments.
“Some people really appreciated the ability to have an appointment without leaving the house,” Jed explained, “but many felt they were getting ripped off because there was no physical examination, yet they were paying the same co-pay.”
Personally, Jed chose to delay bloodwork for more than 6 months because he didn’t want to go to the hospital lab and potentially be exposed.
“I avoided taking medications that need to be monitored, like NSAIDs, because in the past they have affected my liver and kidneys,” he said. “Without proper monitoring, it could cause trouble.”
Unfortunately, foregoing the medications has caused trouble too—Jed began experiencing more stiffness and pain in his peripheral joints. As the pandemic stretches on, it’s unclear how much longer it will be reasonable to delay his care.
For patients with physical disabilities and mobility issues, the pandemic has often made assistance inaccessible. Lene has lived with RA since she was 4 years old. Due to RA-related deformities in her hands, she is unable to self-inject her biologic medication. Prior to the pandemic, Lene’s family doctor did the injections, but with reduced clinic hours and fear of exposure, that no longer became an option. Luckily, Lene found a solution by combining households with her partner so he could administer injections, but she knows not all patients are lucky enough to have that level of help.
“I’m thankful I didn’t have to make the choice between putting myself at risk or going without my biologic,” Lene said. “I worry about others in the RA community whose conditions are not under control or who need to enter clinics for appointments and infusions.”
Lene also emphasized the psychological burden on high-risk patients, especially those who have experienced past medical trauma. Four years ago, Lene ended up in the intensive care unit due to influenza-related complications and was on a ventilator for 2 weeks. The recovery, both physically and emotionally, was intense. Diagnosed with medical PTSD, Lene has been constantly triggered by news about the pandemic and the behavior of other people.
“A lot of people don’t seem to worry about their own risk or the risk they pose to others,” she said. “That’s been really hard for me, on top of all the other difficult things about living in these times.”
How Healthcare Providers Can Help
Personally, I’ve chosen a combination of telehealth visits and outright delay for my own medical care during the pandemic. I had one telephone consultation with my rheumatologist, where he gave me a general idea of my level of risk. He also advised me to stay home and delay the bloodwork I should have had in March.
Since then, I haven’t been anywhere or interacted with anyone outside of my own home and family. I’ve been lucky that my biologic has been delivered without delays, and my husband has been able to pick up the rest of my prescriptions when he does our grocery shopping.
Recently, however, I’ve experienced some concerning symptoms. I emailed my rheumatologist, and he’s now asked me to complete my delayed bloodwork. I’m trying to work up the courage to do so. With my diagnosis, I know I can’t delay medical care indefinitely—and I suspect many other patients in my situation are starting to come to the same conclusion.
In this unprecedented situation, I hope that healthcare providers remember the intense psychological toll the COVID-19 pandemic continues to have on patients who are already managing the emotional impact of living with lifelong rheumatic diseases. Patients utilizing telehealth services need to feel that the time and money they invest is worthwhile, and patients who require in-person attention need reassurance that the care they need can be delivered safely.
To get through this pandemic physically and psychologically, patients living with rheumatic diseases need compassionate providers who can look at the whole picture and provide as much support as possible.
AUTHOR BIO: Mariah Zebrowski Leach is a writer, patient advocate, and mom of three living with rheumatoid arthritis. After learning firsthand the challenges of facing pregnancy and motherhood with a chronic illness, Mariah became passionate about supporting women with chronic illnesses who are or want to become mothers. She launched Mamas Facing Forward in 2015.
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